Wow! The story you are about to read I will have to warn you this will make you do the 'ugly' cry, I just have no words, I am completely in the raw here of emotion that I have not let myself feel in so long if ever. But it is time to let go and just feel.
This story will touch your heart about a family- a mom and her birth day to her baby girl that has Down Syndrome, she explains her day so well and so raw. This story has blessed me way beyond measure, I am so glad she had strength enough to tell it like she did. I hope one day to tell our story with Hope as well as she has told her story with Nella, her little bunny.
Nella Cordelia: A Birth Story
Kelle HamptonJanuary 29, 2010http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
I must not forget about her book coming out April 2nd 'Bloom" in paper back, it is on pre-order now at Amazon and a few other online book stores just click on her links to find out more.
Here is a great article that crossed my path today. Being a single parent is overwhelming enough and having a special needs child is overwhelming, but putting those two together and it's and extraordinary blow. I hope this article will be helpful, insightful and be practical as well.
Double Whammy: Single parents and special needs kids
- NOVEMBER 16, 2011
- BY: WENDY MILLER
This picture is Hope, my daughter waiting for the school bus earlier this year, I was taking her picture for another purpose so the chest harness is not shown here, but as you can see she has a belt that goes across her lap and then leg straps as well, then you add the chest harness, so that is a lot of straps to try and cut through for a bus driver in case of an emergency not to mention the other students on the bus and maybe another student or two or so that is in a wheelchair as well, with all their straps to take care of, so the bus driver had a question earlier this year for me, what do I do? Honestly I was at a loss myself about that, and it has haunted me since.
This article is a great start to get some of those types of questions answered so I had to share, It doesn't necessarily answer the question Hope's bus driver and I have about our situation, but it is informative and lets you know you can do something about a situation if something is not working.
I hope this will be a help to all of you as well.Evacuating Passengers With Special Needs Equipment- Article from School Bus Fleet by Jean M. Zimmerman
November 2, 2012http://www.schoolbusfleet.com/Channel/Special-Needs/Articles/2012/11/Evacuating-passengers-with-special-needs-and-equipment/Page/1.aspx#postacomment
I don't know about you but as for me and my family since we had a child with special needs it has been such a battle to really be involved as much as we were in church, and it has been so devastating to our family in so many ways. So you have that constant question to God what are you really doing here, why would you give us a task that seems so impossible to reach? How are we suppose to serve you in the church and ministry when we have such a huge responsibility to our Hope. How can we really serve you? And then the big question is, how can she know you spiritually herself? But in the last year God has shown me some amazing things about Hope and how she praises Him in her own way and really does know about God, she is a spiritual being and loves to worship her God, she loves to go to Sunday School and 'sing' and worship His praises, she loves to be in the car and sing and worship His praises, and she loves to hear the Word of God and the Bible stories, she may not be able to physically tell you or someone about Christ but you still can see it in her life and she has such an testimony in her Jr Church and Sunday School.Now I am still figuring out what and how I can do more in ministry and be more involved with my local church, but God is showing me more and more that it is family first and how you need to be whole in that and that will be your main ministry and testimony right there, and once you get a hold of that, then you can move on. 2 Peter 1:
1 Simon Peter, a servant and an apostle of Jesus Christ, to them that have obtained like precious faith with us through the righteousness of God and our Saviour Jesus Christ: 2 Grace and peace be multiplied unto you through the knowledge of God, and of Jesus our Lord, 3 According as his divine power hath given unto us all things that pertain unto life and godliness, through the knowledge of him that hath called us to glory and virtue: 4 Whereby are given unto us exceeding great and precious promises: that by these ye might be partakers of the divine nature, having escaped the corruption that is in the world through lust. 5 And beside this, giving all diligence, add to your faith virtue; and to virtue knowledge; 6 And to knowledge temperance; and to temperance patience; and to patience godliness; 7 And to godliness brotherly kindness; and to brotherly kindness charity. 8 For if these things be in you, and abound , they make you that ye shall neither be barren nor unfruitful in the knowledge of our Lord Jesus Christ. 9 But he that lacketh these things is blind, and cannot see afar off , and hath forgotten that he was purged from his old sins.How the Messages interprets 2 Peter 1: 1-9~1 I, Simon Peter, am a servant and apostle of Jesus Christ. I write this to you whose experience with God is as life-changing as ours, all due to our God's straight dealing and the intervention of our God and Savior, Jesus Christ. 2 Grace and peace to you many times over as you deepen in your experience with God and Jesus, our Master. 3 Everything that goes into a life of pleasing God has been miraculously given to us by getting to know, personally and intimately, the One who invited us to God. The best invitation we ever received! 4 We were also given absolutely terrific promises to pass on to you - your tickets to participation in the life of God after you turned your back on a world corrupted by lust. 5 So don't lose a minute in building on what you've been given, complementing your basic faith with good character, spiritual understanding, 6 alert discipline, passionate patience, reverent wonder, 7 warm friendliness, and generous love, each dimension fitting into and developing the others. 8 With these qualities active and growing in your lives, no grass will grow under your feet, no day will pass without its reward as you mature in your experience of our Master Jesus. 9 Without these qualities you can't see what's right before you, oblivious that your old sinful life has been wiped off the books.
Here is a great way to get started and continue on that path by Eraina Davis Married with a Special Needs Child God has a Plan for your Childrenhttp://blackandmarriedwithkids.com/2012/12/married-with-a-special-needs-child-god-has-a-plan-for-your-children/
I have not come across this problem yet, that insurance wont pay for needed therapies, but I am sure this is going to be more common soon. We are already dealing with our insurance not paying for our daughters medical food and medical food supplies, but we will see how they will respond to this years therapies. Here is a blog below about home therapy that I hope that will help more than just autistic families, it looks really good and informative.
The Ultimate Guide to Autism Home Therapy by Pennyhttp://www.meetpenny.com/2012/08/the-ultimate-guide-to-autism-home-therapy/
Everyday it has been an anguish that we are still at war and still losing men and women. It is so devastating too that if they do survive and come home to their families, what is it like to go back to 'regular' life, how does one do that with all the horrific experiences they have had to go through. The least we can do for the service men and women is to make sure they have all the help and support they need and their families. Let's not let them down, they have not let us down!
The War At Home: Healing PTSD at I Support Our Veterans website
Photo from photobucket.com
Cameras or no Cameras? That is the question of the day. As a parent with a special needs daughter, I most definitely want video feed in the classroom where I can and or an administrator to click on a icon and be able to watch the classroom at any given moment with any given electronic device, whether it be my smart phone, tablet, or laptop.
I see it as kind of a strange and interesting twist in that it is ok and acceptable to have live stream video in a dogs or pet day care facility and there are no questions asked or no eyebrows raised and it’s all well accepted. Now I know it is not mandatory that these specific facilities are to have cameras but it is something they do to attract people to use their services above another’s that may not have that available. The day cares know it will give the pet’s human a bit of peace of mind that their pet is having fun and is being taken care of properly without getting abused or being mixed with other pets that may not play so nice with others.
I have been in a classroom teaching as well, and to be honest for my experience it was terrifying just to be in a room with children and you are suppose to educate them, and on top of that to have video going that I knew parents and or administrators could look at, at any given moment would of just totally sent me over the edge. But I think as I got used to the students eventually I would of got used to the camera as well, and may have found how it could of helped out not only with maybe some discipline problems, but maybe why there were discipline problems with a certain student, maybe there was a trigger or something that set that student off that I was not realizing, also it could of given my administrator something to give me compliments on what I was doing right and give me pointers on what I could work on, and to help out on any areas of where any student may have some issues, and we could show the parent in parent meetings and discuss it with them as we showed them actual footage. It would show the parent we have nothing to hide and that we truly are concern of their child’s education and are truly trying our best for their child, now I am not completely naive here I know some parents won’t be satisfied no matter what you do. But at the same time you have actual footage to prove you are there for the students best interest, so if you are there for the students best interest then why not cameras. And if the parents are still not satisfied then you can say, well I am sorry but this must not be the right school for you and your child. I know public schools would cringe at this because that could be potential loss of money, but if you have a good reputation parents would be knocking down the doors to enroll their child in your school.
Plus with the technology now there is live stream video or Skype happening already because of distant learning, other classes connecting to another class, etc. It’s not just in colleges now it is all over. So if teachers and administrators are ok with that then why not for parents and admins as well?
I know this would be my ideal classroom for my child, that if I am not allowed to be there or just not able to be there because of work and or other activities that need to be done while my child is at school, to have camera’s would give me peace of mind, and I know how she is being educated and it could help our family to be able to know how to continue the things she is learning and how she is learning them at home. I really believe it could be a win-win for schools and parents if they would allow this. There is the argument of other students being in the classroom and what about privacy for everyone, this issue could be resolved I think pretty easily, by explaining to the parents it is for the safety and education purposes of their child and have the parent sign a permission form saying they agree to this type of classroom atmosphere. I don't know of any parent as of right now would have an issue with that.
I would love to hear other thoughts and perspective on this issue so please do not hesitate to comment.
Here is another blog link about the subject.
The Interview that Joni and Friends presents here is so honest and a must watch, whether you have a disabled child, grandchild, nephew, cousin or not this will let you in a little bit of what a family goes through the troubles and the blessings.I hope you will be able to connect and see through the eyes of these families. When Disability Hits HomeChuck Colson and R.C. Sproulhttp://www.joniandfriends.org/television/when-disability-hits-home/
Beck Family at the Lake
Latest Update on Avery's life, she is still inspiring and having an impact....August 29, 2013-http://www.chron.com/fortbend/news/article/Sugar-Land-Skeeters-help-Avery-finish-Bucket-List-3821891.php?fb_action_ids=3939883128382&fb_action_types=og.likes&fb_source=timeline_og&action_object_map=%7B%223939883128382%22%3A10151119476064334%7D&action_type_map=%7B%223939883128382%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D#src=fb Past Updates:http://averycan.blogspot.com/?spref=fb
Honestly I am struggling to find words right now, my heart is so sadden and broken but at the same time having hope. Photo from Avery's facebook photo album
I was going to introduce to you Avery's Bucket List blog a few days ago and had saved all the URLs etc for it and was so excited to share how this family has taken something in their lives so devastating and use it to make a positive impact not only in their lives but thousands more. Of course as you know how life goes things got busy and I
had not been able to get a chance to sit down and get it done.
Unfortunately Avery past away April 30th and is no longer with us but is in rest in peace in heaven with Jesus, having no more pain or sickness, which is awesome for her just heart breaking for us. But her dad had promised her to keep tugging away at her cause and spread the word and awareness for her, so he is keeping that promise and I will share with you her facebook page and her blog.
It is so awesome and refreshing to see people in their most raw moments to carry on and to live life and not let situations and circumstances define them and find a way to move on and get past unbelievable situations that are hard to understand. I hope you are blessed by Avery and her family as I have been blessed with just in the few days of finding them on facebook and her blog.
http://averycan.blogspot.com/ God BlessAvery, you will be missed, you are such an inspiration to me and to so many people even if they do not have the issues you had and you have done this in having such a short time in life here on earth. You and your family have been a great testimony to the world of how great and awesome blessings can come even when your world seems to be falling apart around you. Thank you for being brave enough to share your story and share your life with us, it is much appreciated and uplifting, I know your daddy will make you proud :)To help her cause click on link and sign the petitionhttp://www.change.org/petitions/ob-gyn-offices-medical-professionals-any-woman-that-is-plans-to-be-pregnant-make-sma-carrier-screening-standard Important read before signing petition-I must warn you please read before you sign and make the decision you are comfortable to make, I am not sure if this was her family that really helped to put this up but I am working on finding out.